Saturday, September 22, 2007

Sorry, I have been busy the last days preparing my US trip. I will visit LA, Orange county, Santa Barbara, San Diego, Boston, Storrs, Princeton, possibly NY on a day trip, and Bethesda near Washinton DC. Let me know if any of you wants to me up.

Re stuttering, I still want to reply to Greg's comments. I also was thinking that instability in speech systems (via genetics or neurological incident) might be a necessary condition but not sufficient condition to develop stuttering. For example, if you have fast-talker genes and you have an unstable speech system, you might develop chronic stuttering, because the system cannot handle the fast speech rate.

Friday, September 14, 2007

You should check out this very American but well done and cool talk radio on stuttering: here. Just hit the PLAY button to listen to them:

Greg, Peter and Eric get together and talk about stuttering and life. We have fun, laugh, argue and agree, talk about the stuttering world, music, movies, and our wives and girlfriends. We try and make sense of the whole stuttering thing by talking about it. Tune in and join the conversation!

I hope they will invite me for a guest appearance, though I am a bit scared that I am not doing as well as they in controlling my dysfluencies. ;-)

Putting on the stuttering glasses, the stuttered speech is very often made worse due to the panic that kicks in at blocks. I often feel being out-of-control during my speech, unable to slow down, and then I have even more blocks. According to the study, Pagoclone reduces the frequency of panic attacks, and this effect might very well happen in people who stutter during their speech. They are less likely to get into a panic or the panic will be less severe, thereby giving the person more control of his or her speech, which in turn decreases the probability of blocks.

This would suggest that Pagoclone doesn't act and therfore doesnt tell us anything about stuttering itself (i.e. why do they have many more blocks than fluent speakers?), but reduces the panic secondary symptoms leading to more control and less stuttering.

Saturday, September 08, 2007

The presentation of stuttering on TV is like the unfortunate Mission Accomplished banner of the Iraq war. The proclaimed victories over stuttering turn out to be just slightly more complicated. But you wouldnt have thought so watching TV shows on CNN, Oprah, or Jauch (a German talk-show). My message: Making a treatment decision based on these shows is foolish. And if you are a parent, plainly irresponsible. Unfortunately, that's exactly how most people choose their treatment. I have to confess that I am also drawn by such TV interviews, and my rational mind needs to fight the emotional manipulation which goes as follows.

a) Create an emotionally painful situation for the audience- cutie shot of a child that stutters turning in desperation to a female who has this look of "I wish I could help you darling", or- freak shot of a stutterer with severe symptoms, favourites are head movements, drooling, or 5-second silent (longer is no good as audience might switch to other channel).

b) Get the expert to rationally describe what has just happened. Therefore find an expert that has academic credentials that have vaguely something to do with stuttering, but is very telegenic. If not possible, just label the person "stuttering expert". Experts are often someone the TV crew know, like the sister of the friend of a colleague. If you have to chose between semi-expert but telegenic or "nerdy" real expert, always go for the telegenic person.

c) get the interviewer to engage with the sufferer and show compassion.

d) present a magic unexpected simple and fast solution to relieve the audience from this uncomfortable untenable situation, and explain in black and white. Humans absolutely adore fast, simple and obvious solutions, which obviously do not exist in reality.

e) show child or adult stutterer again but now speaking fluently, talking about how their life has changed. Not very difficult to achieve. Take the most successful patient from a stuttering treatment. Make sure the patients has just finished treatment so to benefit from carry-over fluency. If he still stutters a bit, let him talk for 10 minutes, and only take the 20 seconds where he is fluent! Children are best, because 80% recover anyway. So if you wait a few months, you have a fluent child.

f) now often the sales part kicks in. Where can I get this magic device? Where is this therapy offered? When is the medication available?

g) mention some disclaimer like long-term relapse possible, and my favourite is "talk to your doctor". These words are typically completely ignored as euphoria of the miracle still persists. But legally speaking, you cannot be not sued for your misleading sensational portrayal.

Consequence: The mothers, grandmothers or friends watch the interview, and tell you how stuttering can be cured. You say: But it's not that easy, but they insist and claim you are not doing anything and self-defeating. The fact that you are actually more of an expert than they are is conveniently ignored. After all, it's on TV and CNN and especially Oprah must know better.

Let me say it again: THESE PEOPLE HAVE NO CLUE AT ALL. They are journalists out there to sell a story, and they rely on the experts that they have choosen. I am not saying that some experts are no experts. I would guess 50% are real experts. But even if they actually make subtle statements with disclaimers, the recodings of say 20 minutes are cut down to 2-3 minutes and typically over-simplified.

So if you decide on a treatment, DONT RELY ON THE TV INTERVIEWS. Get in contact with a national stuttering association, and inform yourself. Not only do you make a more informed decision, you also have realistic expectations of your potential progress or that of your son/daughter.

Greg Snyder wrote an interesting article The Existence of Stuttering in Sign Language and other Forms of Expressive Communication: Sufficient Cause for the Emergence of a New Stuttering Paradigm?: see here. Let me post a few extracts, especially as I am sharing some of his thoughts:

While reports of stuttering-like behaviors occurring in sign language have been available for almost 70 years, relatively little attention has been given to its existence and how the existence of stuttered sign may impact our understanding of the stuttering phenomenon. This manuscript provides a brief literature review of stuttered sign and offers a list of potential stuttered sign behaviors. Data is presented suggesting that stuttering is a phenomenon occurring in expressive communication, rather than speech and sign alone. Consequently, it is proposed that the prevailing theoretical constructs fail to account for stuttering in expressive modalities other than speech. It is suggested that the field of speech-language pathology reevaluate and possibly abandon the current pre-paradigmatic views concerning the nature of stuttering so that another perspective can emerge that better accounts for the stuttering phenomenon.

And,

If the data presented in this manuscript does reflect reality, then we are forced to question the belief that stuttering is a speech disorder. On the contrary, the stuttering phenomenon appears to occur in a variety of expressive (communication) modalities. Further, if this suggestion is reality, then stuttering ceases to be a single (speech-related) pathology unto itself. Instead, it is suggested that the observable manifestations of stuttering behaviors are symptomatic responses relative to their corresponding expressive modality. These symptomatic behaviors may be in response to errors in the formulation, processing, and/or execution of expressive output, such as language; it is suggested that these symptomatic behaviors are natural compensatory responses at self correction from errors in processing or initiation at the central level.In short, if the data and analysis presented in this manuscript do reflect reality, then the traditional views and definitions of stuttering as a speech disorder fail to account for the stuttering phenomenon. Consequently, researchers and clinical scientists may consider abandoning much of the prevailing paradigmatic (i.e., pre-paradigmatic) thought on stuttering, as it can no longer provide a truly scientific and falsifiable theoretical framework capable of accounting for the stuttering phenomenon. If stuttering behaviors are indeed symptomatic responses relative to errors in expressive output, including expressive communication, then a new paradigm will need to emerge to account for this new perceived reality.

Apart from his "making it sound more dramatic and complicated that it really is" style, I roughly agree with Greg, and see two necessary conditions needed for stuttering:1) glitches in the speech system (leading to an temporary inability to initiate the appropriate speech motor sequence). However I do no agree that stuttering is not a speech disorder, because these glitches are not normal, and are due to defects in the speech system. Stuttering starts inside the brain.2) compensatory efforts that develop and lead to overt stuttering behaviour and secondary symptoms. I agree that other glitches like in hand signing can lead to similar compensatory efforts, i.e. that these efforts are not specific to stuttering but a generic consequence to certain underperforming systems.

Lets put drugs into categories according to their impact, drugs that:- make stuttering worse for all.- make stuttering better for all.- make stuttering worse for some and better for others,- make stuttering better for some and no impact for others,- make stuttering worse for some and no impact for others,- have no impact on stuttering.

I discussed the various systems that drugs could act on: here. It should be possible to systematically go through all drugs, classify them according to the above scheme, look in which brain regions / pathways these drugs are known to act, and then set up a list of the systems involved in stuttering. For example, if a drug has no impact then all the brain regions where this drug act should not be involved in stuttering, and so on. So similar to an fMRI or PET scan, such a study could build up a "drug brain scan" showing the regions of stuttering-relevant activity. Maybe this is practically not feasible, but theoretically it should work!

Thursday, September 06, 2007

I thought I would put this first-person report as a post, because he describes very well what many of us are going through:

I am a 29 year old severe chronic stutterer. After many years of ineffective sessions with various incompetent therapists, trying a couple of those expensive, ludicrous “miracle cure” devices, psychics, witch doctors, benzodiazepines and horrible anti-psychotic meds; I have grown rather hopeless and apathetic towards the idea of my affliction ever significantly improving and completely stopped keeping up with the latest developments and events in the stuttering community.

In a way, losing the hope actually helped me, by making me realize that I am just going to have to live with this condition and making me stop putting off my life until I’m “cured”. I decided to get out there and do the things I want, without worrying what others are going to think of the way I look (talking about the secondaries) and sound.I now have a job that requires a decent amount of communication and no longer have avoidance issues when it comes to things such as ordering at restaurants, asking for help at a store, getting a drink at a bar, etc. I still have issues with meeting new people and phone conversations with strangers, but I am improving there as well.Unfortunately, stuttering is still a major hindrance to my social life, especially when it comes to attracting females. It’s definitely wrecking my “game”, which is a major issue, since I would like to meet a nice young lady and start a family within the next few years.Any way, recently I finally decided to get on the net and catch up on all the latest stuttering-related news and developments. This is how I discovered this very informative blog.I also learned of Pagoclone and dug up as much info on it as I could find on the web. I am cautiously optimistic and even a little bit excited about it. The prospect of it improving my fluency by even 30% or so is very appealing, because it would make it a lot easier for me to control the secondaries and successfully implement fluency shaping techniques. Because of this, I recently submitted a trials volunteer form, but have not heard any thing back yet.I am very curious to hear from the people who participated in the previous trials, for the obvious reasons, but also because I am wondering whether it would be a good idea to invest in some Indevus stock right about now. If Pagoclone does get the FDA go-ahead and goes into production, how big is it going to be? Is the market big enough for Indevus to make huge profit off of it? If it going to become the new Ritalin and be overzealously prescribed to every 4 year old who has a minor disfluency? What do you guys ?

Tuesday, September 04, 2007

Jerry Maguire, professor at UCLA Irvine and chief investigator of the Pagoclone trials, has invited me to the opening of his research center on October 4th made possible by the generous donation from Granville Kirkup: see here.

So I will be in LA from October 2nd onwards for a week, and then to Boston and possibly DC. So if any of you are from these areas let me know and we can meet up. If you are a millionaire, you can also invite me to stay at your guest house and attend your high-society party. I hope for response from Beverly Hills. :-)

Sunday, September 02, 2007

If you have participated in the Pagoclone Phase II study and continued its use during the open-label phase, please contact me under t o m DOT w e i d i g a t gmail.com. It would be interesting for me and the other readers to read about your personal experiences. You can make your comments anonymously.

Saturday, September 01, 2007

Stuttering is very strange for oneself and for others. I have this practical joke I play on non-stutterers and stutterers alike from time to time, along the following line. "Yes, we know you stutter". In a very slow and controlled manner, I look them in the eyes and say fluently "Mmmeee? Nnnoo. Actually I am an actor. I do not stutter, I am just preparing for this movie that I am going to audition in 3 weeks time. I play a person who stutters." Then they are caught off guard, smile nervously and expect me to stutter very soon. But I keep on talking, and talking, and talking fluently! They try everything to put me off-guard but I keep on being fluent... The longer I do it, the more amazed they (and myself, too!) are. And they all wait for me to relieve them "from this nightmare" with a stutter.

I had people starting to believe that I am a true actor! (which of course doesn't surprise me at all given my fantastic looks and charisma! :-) People that know me longer know it's a a bit of a joke, but they are still completely amazed that I have transformed from this "ehhm"- hectic- dysfluent speech person to a confident fluent actor voice... Sometimes they tell me that I stuttered 20 years ago. I am just telling them that I have been acting my whole life... it is boring to be fluent... i just get a kick out of others being embarrassed...

By the way, did I tell you that I do not really stutter. I am doing a PhD in sociology and analyse the impact of blogging on a special interest group...